She is lovely though! I hope the distraction has helped for just a moment this evening. Xx
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Originally posted by Hairbsb View PostI have bulbar als. Currently sitting in a pub crying. Knowing I will leave my busband Clive behind and ill never see my children get married or have children.Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.
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Hairbsb I am so sorry you got the diagnosis you dreaded. I try not to think about what I will miss as it is unbearable. I hope you were given details of all the support now available to you, eg DS1500, SALT team etc? xBulbar onset diagnosed Nov 21. No speech but limbs ok so far.
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Hairbsb the application was made for me when I was diagnosed. I had to follow up with a phone call (my daughter did it as my speech was poor). This is for Personal Independence Payment which is not means tested. I think I was fortunate as I received my first payment within days of my diagnosis. xBulbar onset diagnosed Nov 21. No speech but limbs ok so far.
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Hairbsb
So sorry you got the diagnosis we all dread. It does get easier with time but a huge shock nonetheless. I still veer from positive and good days to the depths of a big black hole. We are all here for you.
Sending you love and hugs
🤗🤗🤗🤗 xxDiagnosed 3rd November 2021 Bulbar Onset
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Morning to all my really special friends this morning. The sun is shining, I've had a shake (not literally) and getting ready for work. There may be struggles but cuddles help, laughter is the best medicine, think before you speak (I can't but you get my drift), and as the presenter of Mr and Mrs used to say (can't think of his name) "Be nice to each other' x
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20220804_124812.jpg
I'm still just about managing to go on holidays
Our tour of the North continues.
This is me at Richmond Falls yesterday.
Hope you are all finding something to be happy about. ❤️Hi, I'm Eddie.
Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
Still wondering what the future will bring.
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